The doctor who *almost* helped me (How I developed central sensitization, Part 6)

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Okay, so here’s the story of the time I thought I’d found the right person to help me, which of course, made it all the more disappointing when it didn’t turn out to be the case.

In telling my story, I’m choosing to gloss over every little ache and pain I had; every time I thought I had some kind of injury, but no one could actually find anything wrong.  It’s not really necessary to the story, and I don’t want you to get bogged down in negativity.  The point, again, is that I did eventually find answers.

But here’s the story of the first time I thought I’d found them.

***

It was 2006; my first time seeing a physiatrist.  Physiatrists are doctors who specialize in non-surgical options to treat musculoskeletal pain– so, basically, they do everything else.  Their approach is generally thought to be more holistic.  They can provide options such as lidocaine and cortisone injections, but they also look at the patient as a whole person and can recommend lifestyle changes as well.  It’s a pretty cool specialty.

And I was pretty much seeing the best one.  I loved Dr. V. the first time I saw her.  She’d won all kinds of awards for going above and beyond to help her patients.  And she was just so… nice.  She provided me with so much hope.

Dr. V. reassured me that there was no reason, as a healthy person in my early 20’s, I shouldn’t be able to do all of the things I wanted to do.

She recommended a bunch of promising options, including trigger point injections, as well as medical acupuncture, which she actually performed herself.

And she was the first person to really explain to me that my brain was magnifying the sensations of pain I felt, “like a computer.”  My brain was “zooming in” and making what should be a small problem, or no problem at all, look like a big problem.

For a time, I really thought Dr. V. was going to be the one to finally “fix” me, to finally reverse this impossible pattern I’d been dealing with for so long.  I felt like she really got me.

***

Dr. V. seemed to understand that, from time to time, I would come in with pain in a new part of my body, and would need someone to tell me whether, in fact, I had an injury or whether it was just pain.

There were so many times. I felt safe; I felt believed.  I just needed a place to go where someone could tell me whether or not I had an injury or not.  I didn’t always need to be referred to physical therapy, or start some new treatment.  Sometimes, the pain would just diminish once someone actually told me it was safe to ignore it.  (Which, as I later learned, makes 100% sense once you learn about how the nervous system works).

The only thing is, Dr. V. did want to refer me elsewhere: to therapy.  She seemed to understand that my brain was distorting my perception of pain, but she kept coming back to the idea that it had a psychological or emotional cause (which, I would later learn, is not a prerequisite for central sensitization).

She offered me the names of a few different therapists she had come into contact with over the years.  I would go and see them, but nothing ever really “clicked.”  Because we were looking for something that wasn’t there– my pain wasn’t being caused by my emotions.

***

What I really needed, again, was for someone to help me understand my physical pain.  As I’ve explained in my Calming Your Nervous System section of this blog, when you have the kind of chronic pain I had (and still have, to an extent) it’s like your body’s pain protection system has gone into overdrive.  It’s trying to protect you, but it’s stuck in the “on” position all the time.

Luckily, the nervous system is complex, and although there are multiple components involved in keeping this process going, there are other aspects of the nervous system which can be used to turn the system “off.”

One way to do that is to understand, rationally, that your body isn’t actually in danger; that you aren’t actually injured.  This is actually the pain principle behind Pain Neurophysiology Education, the approach to chronic pain treatment that finally helped me.

Of course, I didn’t know any of this at the time, but I sort of stumbled upon this principle myself.  A new part of my body would hurt (or an old one would start hurting again) and it would feel real.  It would feel like something was wrong; something was injured or on the verge of breaking.

That’s why it helped me, to go in and see Dr. V.  To be examined by an actual doctor and be told nothing was wrong.  It helped my nervous system feel “safe” again.  Usually, I’d start feeling better within a day or so after my appointment, before I even got to physical therapy or whatever next treatment she’d recommended.  Because she’d already given my nervous system permission to relax and stop hyper-focusing on that part of my bod.  The pain would be able to fade into the background.

And I was okay with this pattern.  It wasn’t ideal, but it was better than anything I’d found yet.  We hadn’t actually been able to break this cycle of mysterious pain that roamed throughout my body, but at least, with Dr. V. I’d been able to find a way to stop it from taking over my entire life when it started to get bad.

***

But here’s the thing.  I was okay with the holding pattern, but Dr. V. was not.  Because I wasn’t actually getting “better” in a linear fashion that she could write in her notes.  And because she could never actually find anything wrong with me.

There was one day I was 10 minutes late for an hour long appointment.  I’d had to take the Red Line to Mass General, where I saw her, and everything about that morning commute had just been a disaster.

And from the moment she walked into the room, everything had changed.  Her face seemed cold, like there was less color in it than usual.

And she told me she didn’t have time to see me that day.  That I’d been taking time away from her other patients; other patients who actually had horrible diseases and disfigurements and reasons to be in pain.

She said she’d tried to help me, but I hadn’t successfully utilized any of the options she’d given me.  And that if I wasn’t going to be responsible about trying to fix my issues, she wasn’t going to have time for me in the future.

And that was that.  I started to cry and attempted to explain myself, but it didn’t matter.  Her mind was made up.

She said she didn’t have time to stay and talk to me if I’d already missed 15 minutes of our 30 minute appointment.   Her secretary, who I’d sort of become friends, with overheard the whole thing and took my side, poking her head into the room and gently reminding Dr. V. that my appointment was actually supposed to be an hour.

But it didn’t matter; Dr. V. was so angry at that point that no new information was going to make a difference.  It wasn’t really about the time; it was about getting rid of me.

She didn’t outright tell me never to come back and see her again, but by walking out of the room after 5 minutes, she’d made her message pretty clear.

So I never did.

***

Now that I know so much more about central sensitization, I can see that Dr. V. was wrong on multiple levels.  This is why I like to remind people that central sensitization was actually discovered in rats.  It has to do with brain function and neurons and neurotransmitters, not thoughts and feelings.

Somehow, it was like Dr. V. had vaguely heard of central sensitization somewhere, but hadn’t really gotten the full gist.  A lot of people are like that, actually.  They accept that the nervous system can process pain abnormally, but still think it must have to do with emotions.

And I never actually heard the term from her.  I only learned it once I requested a copy of all of my visit notes and saw it there, in my list of diagnoses.  It was #1: central sensitization.

That whole time– she could have just told me the name for it.  I didn’t even know there was one.  I could have learned about it myself– I could have Googled it.  It was discovered in 1983.  There was more information out there than I was given.

But no.  Central sensitization was just there in two small words, right under a lot of passive-aggressively worded comments about exactly how much of my appointment time I’d missed that last time.

***

It’s sad and it’s really shocking.  I do believe that Dr. V. is a good person who just didn’t have enough information, and who got frustrated.

But it shouldn’t be my job, to get “fired” as a patient and request my own office visit notes, only to finally learn there’s a scientific name for what I was going through that she’d never even bothered to tell me.

I could have looked it up myself and learned about it, instead of going on countless wild goose chases to psychotherapy and the terribly disappointing pain clinic she once sent me to.

***

But at least I have answers now, and you know what?  I think I’m sort of proud of myself for getting as far as I did, on my own.  After all, it basically means I’m a genius, since I was able to stumble upon the main principle of pain neurophysiology education all on my own (right?).

***

As you may know, what really did work for me eventually was to meet a physical therapist who had studied PNE with Neil Pearson.  This physical therapist taught me how to understand my nervous system, and to work with it, instead of against it, and to learn ways to get my body to turn the “volume” of the pain back down.

This is why I feel so, so strongly about PNE, and why I was originally inspired to become a physical therapist.

In a way, Dr. V. is part of my inspiration as well– I see how important it is for healthcare practitioners to actually understand the specifics of how chronic pain works.  It’s not enough to just be an empathetic person, because apparently empathy can be replaced by frustration over time, if a patient isn’t getting better.

If you want to know more about PNE, you can check out the Calming Your Nervous System section of my blog, and also definitely check out the work of Neil Pearson!

Hope this was helpful!

How I developed central sensitization: Part 3

Okay, I still can’t believe I’m writing about this part of my story publicly.  But it seems like I’ve reached the point in my life where my need to say something is beginning to outweigh my fear.  So here we go:

***

I was 21.

I’d finally had leg surgery, which had successfully cured my compartment syndrome.  And now I’d just stopped needing to take painkillers for my back.  I’d completed three semesters of college, and I was excited to keep moving forward and try to live a normal life.

These posts have been pretty heavy so far, so I want to take a moment and actually reassure you that this was a really positive time in my life.  I loved my new school, and my new friends, and I loved what I was studying.  I was completely at home in the socially conscious, hippie atmosphere of Western MA–  I felt as though I was finally where I was meant to be.

But something had changed within my body.  Even though I no longer had a major injury, it seemed like every little thing I did could set off some kind of pain.

I’d open a heavy door, and my elbow would hurt afterwards, for days.

I’d do a lot of typing, and my wrists would burn so intensely that I’d start wondering if I had carpal tunnel.

I tried to get back into running, but the first time I reached a good speed, I developed a stabbing pain underneath my right shoulder blade and had to back off.

At the time, I’d had no idea this could have anything to do with the way my nervous system was functioning.  It just seemed like my body had changed; like it wasn’t able to heal from things anymore.

I actually started to wonder if there was something fundamentally wrong, deep in my tissues, and now I was somehow prone to getting injured really easily.  It seemed like every little thing I did created more pain.

***

I didn’t like this new body, and I wanted my old body back.

I remembered what it was like, before my surgery and this whole episode with “glass back syndrome”– before pain had encapsulated my whole body.

I’d had other injuries before, of course– shin splints, as well as a partial tear of my hip flexor tendon during my freshman year of high school.   But what had made these injuries different is the pain always stayed in one place, and when the injury had healed, I was strong.

Now my body was profoundly different.  I felt like it couldn’t withstand anything; couldn’t stand up to life.  Every little thing made me feel like something was broken, or that I was “injured.”

If I opened a door wrong, or carried something heavy, or went for a walk when it was super cold out— every little thing I did seemed to create a “micro-injury.”  I’d have pain, or pins and needles, or some other weird symptom, and feel like I couldn’t use that part of my body for days.

My once powerful body, that had carried me up hills, and down rocky slopes– the body that made half of the girls on my cross-country team hate me, because I was always #1– somehow, right as the rest of my life was starting to get back on track, it had turned to glass.

To be continued in Part 4.

To start from the beginning of this series:

How I developed central sensitization: Part 1

Here’s a post I’ve been meaning to write for a long time: the story of how I personally developed central sensitization.

If you’ve been reading my blog for a while, you’re probably aware that central sensitization occurs as the result of some sort of insult to the central nervous system.  Basically, if the body gets enough practice sending pain signals, it gets “better” at it– meaning you start experiencing pain more intensely, with less provocation.

So.  How did it happen to me?

As I’ve touched up in previous posts, my high school years were pretty rough.  Basically, a bunch of bad things happened in my life, too close together for me to know how to deal with.  When I look back on that time, it’s like my thoughts and emotions were tangled up in one big knot– a knot it would take me years to untie.

At the time, one of the ways I coped was with exercise.  I struggled with depression, and the endorphins I got from exercise were one of the only things that made me feel normal.  That one- or two- hour window each day after my workout was the only time I felt like the clouds lifted, and I could think clearly.

The other way I coped was by restricting my calories and keeping my body at an unhealthily low weight.  I’d perceived myself as being a little bit chubby at the time the bad things started to happen, and being skinny was part of the new me.  Paradoxically, with each ounce of flesh I was able to strip off from my bones, I felt I was adding a kind of layer of “protection” around me, ensuring that things couldn’t go back to the way they had been.

So, I was starving myself, and running an average of 40 miles a week.

***

I ran for my school’s cross-country and track teams, and before I go on, let me say that I loved running for its own sake.  And I was good at it.

But I took it too far.  For a while, my body’s natural ability allowed me to excel even as I got skinnier and skinnier.   I was hitting faster and faster times– winning medals, even– as more of my skeleton became visible.

Obviously, this was a recipe for disaster, and eventually I developed compartment syndrome in my lower legs.  It’s a condition that’s somewhat similar to carpal tunnel– basically, I had a lot of fluid being trapped inside of my lower legs.  I’ll write more about compartment syndrome later, but for now, let’s just say that it got worse and worse until I’d gone from almost being able to run a five-minute mile to barely being able to walk.

I suffered from compartment syndrome for the next two years before finally deciding to have surgery, and wow– I really wish I could take that decision back.  I wish I’d just had surgery sooner, because it really solved the problem almost immediately.

However, at the time, my orthopedist had suggested I try more conservative forms of treatment.  None of them really worked, but on some level, I was lost in my own inertia.

I had been trying, and trying, and trying for so long– forcing myself up at 5 am to work out, when I’d barely been able to sleep the night before because I was so hungry.  I was just done.

***

Those two years, from age 17-19, are somewhat of a blur.  I was still struggling with depression, although things improved dramatically after I graduated from high school.  I actually tried to work out in a pool but wasn’t really feeling it– ironic, because all these years later, the pool has become my second home.  But at the time, I was just too depressed to think or function clearly.

So I waited those two years, sometimes trying conservative treatment methods, sometimes going to physical therapy, sometimes working out in a pool.

The compartment syndrome was not so much excruciating as it was frustrating.  I knew where the limits were pretty clearly– how much I could push myself before the feeling of pressure built up in my lower legs, and my feet started tingling.

But it was still a constant buzz in the background, like an annoying mosquito buzzing around my ear for those two years.  I couldn’t forget about it– couldn’t even stand in line at the movies.  Whoever I went with had to stand in line while I waited on a bench.

***

I tried to go to college like all of my friends.  I actually went to a large Division I school, thinking somehow I’d get back into running.  But really, things were getting worse, and it was becoming harder and harder to walk.  There wasn’t adequate public transportation around campus, and I’d have to decide whether I wanted to walk to the library that day to get my books for class, or if I wanted to actually go to class.  My body couldn’t do both.

That’s when I realized this couldn’t go on, and decided to come home and have surgery.

***

The surgery itself was not very invasive at all.  The place where my orthopedist had to make a few incisions was very superficial (aka close to the surface) so he didn’t have to dig around too much.  I came home from the hospital that same day, and although I spent the following day completely knocked out with narcotic painkillers, by the second day I wasn’t even using my crutches (although I still had casts).

Everything seemed normal right after the surgery, although from what people have told me, surgery like that can be a big trauma to the body.

I didn’t notice anything right away– in fact, I was healing pretty well.  But, as I later learned, it’s possible that everything my nervous system had already been through– the constant bombardment from the compartment syndrome, as well as the surgery- would have a delayed effect.

***

As luck would have it, I had developed acid reflux right around then.  My doctor suggested I try sleeping propped up by pillows at night, so gravity could keep the acid down.

Big mistake.  I woke up after one night in absolute agony.  I had completely thrown my back out– the whole thing felt like one giant muscle spasm.

I had never had such a silly, simple little thing cause so much pain before.  The only injuries I’d had before had been serious running injuries, that came from pounding my legs into pavement 40 miles a week.  But this silly, little simple thing actually had me in excruciating pain.

And this– THIS.  After everything I’d been through, this is how my chronic pain problem started.

Looking back, I can see that it probably wasn’t just the issue of throwing my back out.  Instead, it was probably a combination of factors– everything my body had been through, coming together to create an overwhelming effect all at one time.  My nervous system had just had too much.

Of course, I didn’t know what it was at a time.  I had never heard of such a thing as central sensitization, and in fact, I wouldn’t– not for another six years.  I had a long road ahead of me.

To be continued in Part 2.

Reasons why I write

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Every once in a while, I freak out.  Why in the world am I putting all this personal stuff about my life online?

I woke up this morning feeling like I needed to update my blogging “Mission Statement.”  I wasn’t sure if I was going to share it or not, but now I feel like it belongs here.  So, here are the reasons why I write:

To share what I’ve learned.

To prepare for my future career and crystallize my thoughts.

I’ve had to learn so much and go pretty in-depth on certain topics just to heal myself.  Now, I think it’s pretty clear what my future specialties will be as a PT, and I want to make sure I remember exactly where I’m coming from and what motivates me.

I don’t believe the traditional (insurance-based) physical therapy model is the best.

Honestly, in an ideal world, I wouldn’t have had to learn all this stuff.  Sure, I’m interested in it, but I also had to learn to take things into my own hands.

Even the times I found someone to really help me, it was never quite enough.  They were always under pressure from insurance companies, or company they worked for, to get results and demonstrate that I was progressing by certain markable bench lines each week.

In real life things are not always that clear, especially when you are dealing with a chronic condition.  People have setbacks– it doesn’t necessarily mean that their treatment isn’t helping.  It’s just the way things go.  External factors occur in our lives; our individual health fluctuates.

I recognize there are gaps in our current system, and I see how those gaps have failed me.  

I am putting this information out there so other people don’t have to spend the same amount of time looking for it that I did.

There is no good reason why things took me this long.  Honestly.  It took me years –and appointments with more medical professionals than I care to recall right now– to find the answers I needed, both for chronic pain and my SI joints.

There was no real reason, other than the first few doctors/PT’s I saw didn’t know what they didn’t know, so to speak.  So they left me with the impression nothing more could be done, when that was far from the case.

So now, I put my answers out there, for anyone who is desperately Googling the same things I used to.  

I don’t want it to take you that long.  It’s the best way for me to fight against that sense of pointlessness; to think that at least, maybe my experience can spare someone else what I went through.

I want to turn my experiences into something good.  

For a while, I tried to block out the enormity of my experience, and not acknowledge the big picture of how much things sucked at times.  It was the only way I could get through it at the time; to tell myself things weren’t that bad, to block some of it out.  To ignore how much I was missing out on.

But now that I’m a little bit older and wiser, my outlook has changed.  I try to accept what’s happened, and even try to find the good in it; the lessons learned.

There is good in it.

Luckily, through all of this, I discovered I truly do love learning about the human body.  I had never really thought of myself as much of a science person when I was younger.  In school, I gravitated towards the humanities and social sciences because I felt so passionately about social issues (and I still do).  And when you’re that age, I think you sometimes feel pressure to put yourself into a certain category.  I was a “humanities” person– I didn’t know I could also be a science person.

Educating myself– and others– on the science of the human body allows me to see how far I’ve come.

I haven’t written much about this yet, but when I was younger I put my body through the ringer.  I had an eating disorder and I exercised way too much.  Refusing to listen to my body caused me to develop the injuries that set off this spiral of chronic pain.  So it’s fulfilling for me now– almost meditative– to learn about the body from a scientific perspective, and to help other people find their way to a healthier life.

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So I write:

To gather and clarify my thoughts;

To record the useful information I’ve already learned;

To share things that you might find helpful, some of which took me years to find;

and to let others know that, despite all of what I’ve been through, it’s actually possible to come out on the other side.

I hope what I write is helpful for you.

An Update on Life with One Ovary

One of the topics readers most frequently contact me about is the time I had to have emergency surgery to remove my right ovary.

In case you aren’t familiar with the story, I had had abdominal pain throughout most of my twenties.  Doctors had told me it was nothing to worry about– just digestive issues.

Well, in February 2013– just a few days before my 28th birthday– the pain in my right side, and nausea, became so severe that I went to the emergency room.

There, an ultrasound revealed that I was suffering from ovarian torsion— something had caused my right ovary to rotate, with the Fallopian tube wrapped around it in such a way that its blood supply was being cut off.

The doctors rushed me in to surgery in an attempt to reverse this process and restore blood flow, but it was too late.  The ovary had to be removed.

For months, after this– I’d say a year, really– I suffered from both physical and emotional fall out.  And actually, a lot of what I experienced me is what my readers say they also go through.

I decided it’s high time I give everyone an update on this situation, and I’m here to tell you that, three years later, everything is alright.

***

Physical Symptoms:

I was in pretty significant pain for about two weeks following my surgery.  I really relied on narcotic painkillers.  They masked the pain so well that I’d think I was better and didn’t need them anymore.  Then my last dose would wear off and I’d feel like my world was coming to an end.  Other people (mainly my parents) would have to remind me that I was due for another Percoset, and then I’d come back into my rational mind again.  (By the way, I am a FIRM believer in the usefulness of opioid medications.  This entire ordeal would have been much more emotionally scarring if I’d had to bear the brunt of this mind-warping pain without them) .

After about two weeks I was okay… until my next period.

This is pretty graphic, but I figure if you’re here, you’re interested.  I went back to my OB doc in agony again, like I’d just had the surgery yesterday.  He explained that basically, now that I was menstruating, blood was coming out of  the side my uterus and leaking into my abdomen, because now I had a gap where the Fallopian tube used to be.  Basically, it was a totally benign phenomenon– my body would just reabsorb it– it was just causing pain because there was fluid where fluid wasn’t supposed to be.

At the time, my doctor told me it would be like this every time I got my period, and suggested I take the birth control pill to lighten my periods and ease the pain.  I did this for a few months, but eventually as time wore on, things stopped being painful.  Now I believe that my body just hadn’t fully healed from the surgery.  It’s also possible, as one nurse practitioner suggested, that my nervous system had become sensitized to pain in that area (gee, that sounds familiar!).

What I do know, for sure, is that three years later, I am having normal periods without agonizing pain.  I sometimes do notice that during my period, I’m a little sore on the right side, but it’s something I am pretty much able to ignore.

Mood/Emotions/How Do I Feel?

I feel totally and completely normal.  What all of the doctors told me is true– when you lose one ovary, the other one completely takes over.  You don’t really need two.  (In fact, there’s a reason why we have two).

My left ovary is a magical little powerhouse and it has taken over completely, doing everything I need it to do.  I feel the same.

Blame/Doubt

It took me a really, really long time to work through some of the emotions that came from this.

I am still mad at the doctors who so easily brushed my concerns aside.  To be fair, they were gastroenterologists, not ob-gyns.  But still.  One of them literally even wrote a book on digestive disorders in women.  (I don’t hate her enough to name her here– in fact, she is still my doctor because I think she’s a good gastroenterologist).

But still, on this, she did brush me aside and tell me it was irritable bowel syndrome.  Seeing that I am a woman of child-bearing age, I wish she had thought to tell me to consult an OB-GYN.

I also still think that the gluten-free craze is just a fad, and that it has power to do just as much harm as it does good.  (This doctor’s advice to me, the last time I saw her before this happened, was to try switching to a gluten-free diet to see if I felt better).

But I’m no longer mad at myself.  I did the best I could with the information I had at the time.

I try not to judge myself for the way I handle things.  There have been times I’ve under-reacted, and there have been times I’ve overreacted.  Nobody is perfect.  We do what we can.  Pragmatism is my goal.

Fear of it happening again

And this. This is really the number one thing women write to me about– the fear that the same thing will happen to your good ovary.

I can’t promise you that nothing will, but I can tell you that so far, nothing has happened to mine.  It is just fine.

They told me what happened to me was about as rare as getting hit by a bus, or being struck by lightning.  The odds are like one in a million.  The odds of it happening again? Almost minuscule.

Still, there have been a number of times that I’ve freaked out and rushed into the doctor’s office for an emergency same-day ultrasound.  (When you’ve already been that one in a million, it doesn’t really make you feel like taking chances).  But my ovary has never been twisted.

I’ll tell you the truth, in the past three years, I think I’ve had six of these.  I know that’s a lot.  But I know that it won’t seem like a lot to any of the women who’ve emailed me.

The majority of the times, the doctors were able to decipher what had happened to cause me pain.  That I had ovulated, or was about to ovulate (normal ovulation causes the formation of a little cyst, which then releases the egg).

Some of these cysts, they said, wouldn’t be enough to cause pain in every woman, but for whatever reason, in me– probably now that I’m hyper-focused to that area– I notice it.

And there were a few times I was really scared, when it hurt a lot.  But I learned that, in some women, normal ovulation can be really painful– even more painful than what I was reporting.  So I would just have to trust in the ultrasound, when it showed my ovary just doing its same normal healthy thing.

So, that is where I’m at right now.

I still hope to have kids someday, and as far as I know, there is no real reason why I won’t be able to.

Now that I write this, I can’t believe how sane and calm I sound.

Believe me, it wasn’t always this way.  I was the same as those of you who end up sending me ten panicked emails (it’s okay, I say this affectionately).  Really, I was.   But I had no one to email.  And now, for me, things are okay.  And there is every reason to think that, eventually, they will be for you too.

My two previous posts on my surgery:

So… I lost an ovary

Beware the Red Herring (follow-up post)

The piece that didn’t fit

When I was young, all I wanted was to fit in, to be perfect.  To do what adults expected of me.  I never had a single cavity, I never missed the school bus.   I was always teacher’s pet.

Then, when I hit adolescence, the reverse.  My depression; my eating disorder; I couldn’t function, couldn’t fit in to any kind of mold.  I missed school; my grades suffered.   A few teachers saw who I really was, but in general, I don’t think anyone would have considered me teacher’s pet.

I (mostly) came to terms with these issues…. right around the time my health issues began.  So, really, I have always had trouble fitting in to some kind of external mold; to meeting the expectations of those who’ve never known what it’s like to physically suffer.

Even as a patient, I have come up against the feeling that somehow, I am not meeting someone else’s expectations.  My once-favorite doctor once grew frustrated with me for still saying I was in so much pain, and told me she had patients with much worse problems than me, and basically told me not to come back to her office.

(I have been meaning to write more about this doctor, because it’s from reading copies of her office visit notes that I first came across the term “central sensitization.”  Yet she never actually said the phrase to me– instead, she was one of the people who told me there were psychological explanations for my pain, and kept telling me to go see a therapist.  It’s so strange–she knew the term, but didn’t seem to fully understand what it meant).

I had a similar experience when I was “lucky” enough to become a patient at a well-respected pain management clinic run by a major Boston hospital.  I ran into conflict, right off the bat, with the physical therapist who ran the exercise sessions, because she didn’t agree with my rational for wanting to do a warm-up before exercising.

This is something my high school running coaches– in fact, even my gym teachers, all through school– had always drilled into my head.  Do a warm-up, or you’re much more likely to get injured.  Yet here I was, at a place for the already-injured, having someone tell me that I was “causing problems,” simply for wanting to take care of my body.  (There wasn’t enough time for me to do a warm-up and get through all of my exercises… which I later came to understand that she probably needed me to do, in order to get reimbursed by my insurance company).

So basically, from the age of 14 on, I have been familiar with the feeling of not meeting other people’s expectations… of not even fitting into any kind of mold they can understand.

But you know what?  I’m okay with it.  Because it’s this constant feeling of not fitting in, of being forced to look outside of what’s conventional, that has driven me to discover new things.

How long would it have taken me to discover the term “central sensitization” on my own, if I hadn’t decided to take matters into my own hands and request copies of my records?  I have no idea.  I do know it never came up in any of my science classes, except for about a 5-second mention in one of my neuroscience lectures.  (And if I wasn’t already familiar with the term, I might have missed it).

I do believe that I will have the power to help people someday as a physical therapist, and I think my specialty, if you can call it that, will be to help the “hard cases.”  The people who couldn’t be easily helped, and who, like me, didn’t fit easily into some kind of mold.

And it’s my experiences of not fitting in, of being forced to look “outside of the box” for answers, that will allow me to empathize and help them the most.

…my seeming failures were really just weird-ass portals to something beautiful… all I had to do was give voice to the story.

I am including this amazing talk by the writer Lidia Yuknavitch above, because ever since I discovered it the other night, I haven’t been able to stop listening to it, and she really inspired me to get my thoughts down into this post.

In her talk, Lidia describes how the many “failures” in her life were actually just the beginning of something new… it just took her time to begin to see them that way.  And, she says, if she had given herself permission to “belong,” to believe in herself sooner, she might have been able to recognize them for what they were sooner.

She has so many great quotes– you really have to watch it for yourself– but here, I want to make sure I record:

There’s a myth in most cultures about following your dreams. It’s called the hero’s journey. But I prefer a different myth, that’s slightly to the side of that or underneath it. It’s called the misfit’s myth. And it goes like this: even at the moment of your failure, right then, you are beautiful. You don’t know it yet, but you have the ability to reinvent yourself endlessly. That’s your beauty.

If I could, I’d go back and I’d coach myself. I’d be exactly like those over-50-year-old women who helped me. I’d teach myself how to want things, how to stand up, how to ask for them. I’d say, “You! Yeah, you! You belong in the room, too.” The radiance falls on all of us, and we are nothing without each other.

That’s it, right there:

The radiance falls on all of us, and we are nothing without each other.

Fighting a health issue without judgement, for the first time

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They say one of the worst things a blogger can do is to begin all your posts with an explanation of why it’s been so long since your last post.

Normally I’m able to stop myself from doing this, but I’m going to let myself do it this time, since it’s actually relevant to what I want to say.

The reason I haven’t been on here in so long is I had a crazy past few months dealing with the most insane dust and mold allergies.

I had been living in a super old 1700’s farmhouse that had not been well-maintained.  A good friend had been living there for years and needed a roommate, and the rent was super low.  So I moved in with him, following my return from California.

I had never really had significant allergies before, beyond suffering from pollen one or two weeks out of the year.

But this winter, it came out of nowhere.  I thought I was sick at first, and had to take antibiotics for a sinus infection, but even once that was treated, some of my symptoms never went away.

Thankfully, my primary care physician referred me to an allergist (even though I was convinced I wasn’t the kind of person who had allergies) and sure enough, I tested positive for dust and mold allergies.

By then, things had gotten so bad that I could barely sleep– I was so congested it was hard to breathe.  I’d wake up feeling like I couldn’t get enough air.  My sleep schedule got all messed up, and I started relying on things like Benadryl and Nyquil, which of course left me exhausted the next day.  And during the day, dealing with my symptoms felt like a full-time job.

In the midst of all this, I realized I had to find a new place to live– a pretty intense and financially-involved decision to make when you know you’re not in your right mind.

Somehow it worked out.  It took another month, but I finally ended up moving, and am gradually doing better (my allergy doctor said it might take a few weeks).

I’m a little upset at how much time I lost on this problem– really, I wasn’t able to be productive for much of the winter, until things finally came to a head in March.

However, if I look back, I can see that some good came out of this, in a way.

This was really the first time I experienced a health issue and pursued treatment on it without stopping to judge myself, or the way I was handling it.

***

I mentioned in a previous post that, in the past few years, I came to realize that many of the same issues that contributed to my eating disorder were also affecting the way I handled my health issues.

Specifically, in an unconscious way, I was afraid to devote too much time or effort to “fixing” something with my body, because I was afraid it would trigger the same obsession that caused me to starve myself while running 40+ miles a week, until I eventually developed compartment syndrome.

With issues such as my chronic pain, and then my SI joint issues, I only tried to fix the problem to a certain extent.  I’d go see a specialist, I’d go to PT, I’d do my exercises.  But then I wanted to stop, be a normal girl, focus on other things.

I finally identified this pattern 5 years into my SI joint problem.  I realized, you know what, this problem has completely taken over my life anyway.  It doesn’t really make sense to try to “limit” the time I spend trying to fix it, because things are so limited for me right now anyway.

So I gave myself permission to do whatever it took, and started my SI joint blog as a way to keep track of the things I researched.  And it was during my research for this blog that I first came across another patient saying constant chiropractor adjustments made her worse.  That planted the seed in my mind, and I ultimately came to realize that the same was true for me as well.

With my allergy stuff… I got right to it.  I scheduled an allergy test, and when the first office of the sprawling medical practice couldn’t fit me in for over 6 weeks, I called around until I found an opening in 2 weeks.  I made all the lifestyle changes my doctor recommended, and then some.  And then I moved.

Of course, it was a little easier to proceed without judgement from others in the context of allergies.  After all, we don’t suspect people of “making up” allergies for some kind of gain. You can’t get workers comp for it, and there aren’t any super fun drugs.

But even so, I felt that the biggest difference this time around was in my mind.

I had it in my head that I was a “normal” person, experiencing a problem, and I did what it took to get better.  I didn’t waste time on “whys” or “what ifs.”  I didn’t ask if I deserved to get better, or worry about what the doctors might think of me.  I simply had a problem, and I did what it took to find a solution.

When I first started having chronic pain at nineteen, I thought I deserved it…  I’d starved and abused my body, even though I should have known better, and that the pain and the compartment syndrome and maybe even my SI joint problems were the price I had to pay.

Now, at age 32, I never felt that way about my allergies on any level… I just saw them as a crazy fluke of biology, a random stroke of unfortunate genetic luck that was completely not my fault.

So… it’s interesting to feel this way.

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Does anyone out there know what I mean?

Have you ever come to realize that your own negative beliefs and fears about yourself were affecting the way you pursued treatment?

Don’t let them.  Believe in yourself– believe that you are normal, and that answers are out there.  Because they are.

What is pain neurophysiology education?

In a nutshell, pain neurophysiology education is the type of treatment for chronic pain that changed my life and inspired me to become a physical therapist.

I’ve mentioned it in passing on this blog, but I decided it’s high time I give the topic its own post.

***

In my series “How a physical therapist helped me through my lowest point,” you can read the story of how my life had ground to a halt because of chronic pain, until I finally met Tim, a physical therapist who had studied with Neil Pearson.

Tim treated my pain in an entirely different manner than all the physical therapists and doctors I’d seen previously.

He explained to me that after all my body had been through– running 45 miles a week, only to develop compartment syndrome and barely be able to stand, to live like that for two years, and then to undergo surgery– my nervous system had gotten confused.

All the pain doctors hadn’t been able to explain– it wasn’t because I was crazy.

In fact, the reason I was feeling all this pain was because my body was trying to protect me.

My nervous system had decided the world was a dangerous place.  It was tired of me taking chances– it didn’t want to have to deal with another injury.  So it was making everything hurt.  It was making me feel as though I were made of glass.

But I wasn’t made of glass, Tim assured me.  My body was strong; it was capable.  And this attempt on the part of my nervous system to protect me had over-served its purpose.

Tim explained that the surgery I’d had for compartment syndrome had been successful, and despite how much my legs might hurt at times, I wasn’t going to be able to bring it back just by walking down the street.

***

The pain neurophysiology approach worked when nothing else had, because it gave me a real explanation for the pain that actually made sense.

Before that, all the physical therapists I’d seen (and I’d seen a lot) had taken one of two approaches:

A) You have some underlying soft tissue problem or scar tissue or whatnot that we have to fix with a special treatment, or

B) I can’t really find anything wrong with you, so the pain must be in your head and you should probably see a psychologist.

Neither of these approaches ever made a difference for me.  The “special treatments” for the hidden, subtle issues in approach A never fixed anything or reduced my pain (except temporarily, because I felt like I was doing something).  And approach B never fixed anything, because ultimately these problems were not reflective of my overall mental health.

Instead, I learned, my pain was the result of a specific phenomenon that occurs within the nervous system: central sensitization.  Basically, the underlying principle here is that the more practice the nervous system gets at sending signals, the better it will get at sending those signals.  And that is true of pain signals, along with everything else.

***

Tim didn’t really use the words “pain neurophysiology education” while I was seeing him for treatment.  Instead, I first found this phrase while I was looking through Neil Pearson‘s website, as Tim had urged me to do.

From there, I discovered the names of other physical therapists and researchers who had contributed to developing pain neurophysiology education, or PNE as I’ll be referring to it in the future.

Names such as David Butler of the Neuro Orthopedic Institute, and Lorimer Moseley of the research group Body in Mind.

From there I have discovered so many interesting resources, and articles, and interesting people doing work on the subject.

***

For 2017, I’m trying to get back to my roots on this blog.  I started blogging to educate people on the science of chronic pain, and I really enjoy doing that.  So I’m planning to start channeling more energy towards that again.

So I’m going to start fleshing out this section of the blog again.  I’ll be providing a lot more explanations, linking to great resources, and also quoting excerpts from articles that I think explain things really well.

And I’ll be telling my own story, when it comes to my struggle to understand my body, and learning to deal with central sensitization.

***

For now, I want to leave you with two posts I wrote on some of the main concepts I learned through my experience with PNE:

Understanding pain as your body’s alarm system

Understanding pain as an overprotective friend

These posts tie in a couple of anecdotes from Neil Pearson and Lorimer Moseley that I found particularly helpful.  (Let me say, once again, that I am so, so grateful for their work!).

***

I hope you find this post, and the related articles I linked to, to be helpful!  I’m really excited about the things I plan to write about in the future, and I hope you stay tuned!

A Returning

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“I have been away.

I have often thought of how to begin this blog again after a long hiatus and then more time would pass and there it stood waiting for me to speak, write, and reach out.

The reason for my silence is the same reason for beginning this blog. Living with chronic illness permeates everything we do. It is the scaffolding of which we build each day. It determines our daily plans, what we take on, and what we leave unfinished. As I dedicated each day to doctor’s appointments, physical therapy, medication changes, and rebuilding my life after a health storm, this unfinished blog provided comfort knowing that it was a place for me to return.

As the months passed, I was forced into long stretches of bed rest, breaking from work, my passions, the world, and my voice. This is the cycle, after all, of the chronically ill. It is a sequence of retreat and victory, of silence and stories, and of mining the telos of one’s spirit.  What incites us to account our narrative to others relegates us to silence in other moments in a life lived with chronic illness.

I have to admit that at first my silence was “put upon” me. I was so engulfed in pain, fatigue, and just getting through one hour after another that I had no desire to communicate about the latest health trial. Yet, resignation turned towards choice, as I again reimagined and redesigned a future. It is a truth we face when dealing with an incurable disease that we must rewrite our future story after it is continually malformed by our bodies.

The poet Carmen Tafolla wrote: “I was the fourth ship. Behind Niña, Pinta, Santa María, Lost at sea while watching a seagull, Following the wind and sunset skies, While the others set their charts.” This post is dedicated to the future, to the reciting of a livable future, and to exploring the why in a life filled with medical chaos.

Illness is an invasion of identity. Since living through surgeries, a nine medication regimen, and too many medical procedures, I have searched for an explanation, a pathway, and a satisfactory answer to why. Why did this happen? Why me? I have done everything from pretending that the illness part of my life is nonexistent to studying the mechanisms and pathologies of the body; nonetheless, illness continues to lead its assault.

To live with a chronic degenerative disease one must constantly engage in meaning-making. Why? It is because illness is unremitting and untrustworthy. A medical crisis can topple all that you have worked towards in a mere blink.

Therefore, we are professionals at reconstruction and rebooting our future.  Often times, it is a future tinted by professional and personal sadness. Professional goals wane under the weight of the body often causing an individual to lose their job or relinquish ambitions. Illness demands a personal reimagining of what family looks like sometimes forcing an individual to move in with a family member who subsumes a caregiver role or surrendering the dream of having a family and experiencing parenthood.

Illness fractures identity and makes us feel less complete because completion is continuously interrupted.  I believe searching for the “why me” is not out of anger, jealousy, or pity but out of the attempt to take all these futures interrupted and find fulfillment in a life that no longer looks like the life originally intended.

Chronic illness mandates that the individual who lives with it coat themselves in an extra layer of depth because it is a permanent state and the human mind has forever raised questions about immutability.

I spent the last year in renovation.  It’s frightening; isn’t it?  There’s a trauma processing that must be completed in order to move forward in life.

When I was first diagnosed with endometriosis and a chronic pain condition due to a spinal injury, I had no idea nor was it explained to me that I was going to have to go through a continual cycle of insecurity. I was oblivious to the fact that I was going to have to live my life in a temperamental space.

It is of my opinion that chronic illness patients do not fit easily into the usual experience of loss because our loss is not consistent.  The future is unpredictable and so our stories are discontinued and resumed and this process repeats infinitely.

Thus we are forced to mourn each time and rebuild our futures anew holding our breath again that the house will not collapse with us inside. Our narratives remain disjointed and so without any desire for it we gain a level of complexity that is difficult to communicate and share with others even those we love the most.

I don’t know if there is a way to rid ourselves of this anarchy that illness brings. What I am still learning is that inside this chaos we must pledge to coming out of the other side of it. We must promise to find our voice again.

I have been away but now I am returning.  Each one of us can say that.

Although it may appear like a small triumph, I am proud of my return and I am proud of yours too.”

***

The above post was written by my friend C. over at her blog Para Las Fridas.  I have re-posted it here with her permission because it is quite honestly one of the most amazing accounts of life with chronic illness I have ever read.  From the moment I first read it, I was struck by the way C. managed to put into words aspects of my own experience that I had been afraid to face, much less articulate to myself.

Like the feeling of having lost time, of living according to a completely different calendar than everyone else.  Of knowing I’ve disappeared from the world, for months and years at a time, while life has marched on unrelentingly for everyone else.

The feeling of resurfacing, of returning, without knowing if it’s an illusion, or for how long I’ll be allowed to stay before disappearing again.

The feeling that I’ve become an expert at remaking my identity: after each disappearance and returning, constructing meaning again as best I can, assembling the pieces that make sense, filling in the gaps in a way I hope no one else notices.

C.’s words give me the courage to come on my blog and tell my own story, when I’m afraid it’s been too long, or no one will be able to relate.

I am not the only one who feels this way; I am not the only one who has disappeared and returned.

***

You can check out the rest of C.’s writing at Para Las Fridas!  It is simply incredible.

I also wrote this post outlining some of posts C.’s site that meant the most to me.

Lastly, you can also see what C.’s up to on Twitter.

A Clearing

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So I’ve been clearing out all the old stuff from my storage unit.  Finding so many reminders of all the plans I once had.

The high-heeled boots I bought senior year of high school, right before the Halloween dance.  My friends and I were all going to go as “sexy cops.”  (I know).

My running “spikes,” as our cross-country team called our specialized lightweight racing shoes.

It’s bittersweet, to look back and remember all of the optimism I had towards my goals– goals I would never reach.  Especially when I can recognize that some of those goals were pretty unhealthy.

Why did I need to wear high-heels?  They were only making things worse, as I was developing compartment syndrome.

Why did I need to run?  I truly loved it… but at the same time, I wasn’t truly listening to my body, and ran it into the ground.

So much pressure, to be thin, to be pretty.

So now I’m clearing out my storage unit, and there are just so many clothes.  So many clothes, in just about every size.

My size 2 clothes– the last clothes I bought before my health issues spun out of control and a medication forced me to gain weight.  At the time I thought it was horrible, but now I can see it was a blessing in a disguise.  It took something overpowering, and dramatic, to truly break me out of that way of thinking.

Chronic pain finally pushed the obsession with being thin out of my head.  There was no room for anything else; there was only survival, from one minute to the next.  I’m not sure if anything else could have done that– not without it taking years.

***

But I’ve held on to my old clothes all this time.  I loved them, because they were my way of telling the world, at 16, that I was an adult.  (An adult that wanted to dress just like Buffy!).

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My outfits, at the time, felt like works of art.  Handbags, sweaters, dresses– everything perfect.  My mom had picked out all of my clothes for me as a kid, and in the cutthroat world of high school girlhood, it took me a while to define my style.

Once I did, my clothes became my way of making a statement.  I discovered that the better I looked, the more power I had in the social world of high school.   If I looked perfect, it was harder for other girls to make fun of me.  My clothes became my armor.

When I gained weight at first (right after high school ended), I held on to all my old things because I thought I’d eventually be a size 2 again.  Then, once I realized I never actually wanted to be a size 2 again, I continued to keep them simply because it felt strange to part with them.

They’d helped me to define myself as an adult.  At one point in time, they’d protected me.

And they’d been waiting for me for so long, like a lost bookend, marking where I could find the life I’d been waiting to come back to when things finally got better.

I wasn’t ready, until now, to let them go.

But I don’t need or want that life anymore.  I no longer feel like I need to wear high heels in order to be a true girl.  I don’t want to put on eyeliner every morning like it’s war paint.

And I don’t need to weigh 115 pounds, or to be able to see the outline of my hip bones perfectly, in order to be attractive.

I just want to be me.